Some Days Just Seem So Hard..

[jodielynn]

Hi,my name is jodie. I am glad I found dinet,I hope it well help make me feel not so alone.I had a pacemaker implanted in 2002 for testing positive for autonomic dysfunction. I was doing ok for a few years after the implant,I had my usual dizzy spells,got very lightheaded at times,but the good news was I could function.I was blessed to get pregnant in 2005 through ivf, however after the birth of my second son in 2009,I started to have some new symptoms.

In march of 2009, I was caring my baby upstairs and started to have really bad chest pain.I went to my cardiac dr. They did a stress test and said I was having alot of extra beats. Next step they sent me for was a echo,that showed I know had mvp, I also started to pass out once a week,so I have been on the don't drive list.

This last year has been awful, I try too stay positive for my kids an husband but it is hard at times. I had a cardiac calth. Done,which should nothing new.I have been on florinif,midodrine,verapomil.none worked.

The last six months have been the worst,I pass out at least three times a week,I feel so weak,and get alot of extra pvc that keep me up at night. I live in ma,but I was lucky enough to fly with my husband to see dr Grubb,he was great. I got the new biotronic pacemaker that he suggested,but still no luck. I went on adderall,mestinon and cymbalta without any luck.

I also went on octreotide,and had no luck. Very hard on my stomach. The thing that really scares me know is that when I passout I stay out longer,before I would wake up fast. I also have such crazy heart rhythms I have gone in afib twice and my local cardiologist says don't be alarmed. With my two young boys its hard not too. I am hoping to touch base with dr grubb to fill him in on the latest issues.

Has any of you been down this road?

[lieze]

I don't blame you for being concerned.

It is especially difficult having to care for children while feeling so poorly for several reasons.

One is just the care involved with taking care of them, worrying about the times when you aren't able to do for them that they are safe and okay.

And feeling like you really need to have someone looking out for you also.

I am lucky that I have never passed out. That has to be very scary for you.

Are you able to drink extra fluid etc???

I also wonder if Xanax or something like that might help you when you're having your abnormal heart rhythms if you've tried that or not.

It was an older woman who told me that if you have heart problems and cannot tolerate heart meds that Xanax works wonders. Her husband would take one when he had issues and it helped him right out.

I would make sure you ask your cardiologist if it is okay before you try it.

Do you have any warning before you pass out?

Can you have something set up where you contact a neighbor or a family member or friend to come right away to check on you or the kids?

That might be a really good idea if it works for you.

I am somewhat in the same boat as you are, I am not on any meds and have lost too much weight.

My body is very weak right now so I guess my number one concern is to get some food in my body and try to get to a better place.

I'm glad you were able to get into Dr Grubb and hope that maybe he can offer some more suggestions when you see him next.

[Sarah4444]

Hi Jodie,

I have not had nearly as much heart trouble as you, but I also have two young kids and know how hard it is to manage. I just wanted to say welcome here, and I really hope things get better for you soon-

Sarah

[jodielynn]

Thank you both,for your kind words. Sorry too hear that you both are having difficulties still. Yes I have a few good neighbors I can't count on,very blessed. I have tried xanax,but no luck thank you for asking. Do any of you have crazy bps. Mine seem to go all over the place. Last night,I woke up with 169 pulse,with bp 95/56.

[jodielynn]

Lieze, I use to get a warning before I passed out,I would get chest pain. However I don't get any warnings anymore.

[kayjay]

Jodie, just wanted to welcome you. I don't have a pacemaker so I don't think that I can be much help. I had undiagnosed pots with both of my children. I can tell you that it is better now that they are older ( caring for them... not the pots). I take klonopin and nadolol.

I do want to mention because you have young children that Mayo clinic docs told me to drink v8 even before I get out of bed and to drink pedialyte if I get a fever. This has helped me a lot. Also did they say anything to you about using compression?